Tag Archives: NHS

I have the headache from hell. It’s been here since Storm Irma hit landfall in Florida a few weeks ago. It’s not going away now though.

I went to London for 3 days – home again after two whole years. Four years since I’d been to where I used to live and the West End, because once I moved to Leyton and was ill, I never could go back. I only went to Stratford (and frankly that was pretty good enough, too – great area!). This was the first time I had been and the first time I’d used a proper wheelchair there… But the biggest shock wasn’t being back in London (that was just normal, like visiting the hometown you grew up in and love). No… The biggest shock was coming back.

When I was there, staying in Angel [Islington], it was far from perfect. But things were easier. I wasn’t as ill. Wasn’t in as much pain. I was stressed to hell and kingdoms come, but I wasn’t as ill. I was able to get up 1-2 hours earlier than [here] in north Wales, and with far more ease. But since I’ve returned to north Wales, the difference (whatever the difference is) has hit me with a sledghammer and then some. It’s, quite frankly, utterly shocking and horrible.

It’s bad enough this Aspie Girl had to leave her home (London) in the first place. Now, after going back like nothing had happened (except with more pain and a new wheelchair), the difference in… whatever… is striking. And maybe because I’m not used to it now, I can’t cope with it. With whatever it is here [Wales] that does make my condition that little bit worse. I don’t know if it’s a psychological thing affecting the Firbo, or a Fibro thing affecting the Psychologial. But whatever it is, it’s there and it’s real. And shocking. So to be so brutally tasked with trying to “Cope” with it, is boslutely horrible and really hard.

No, I did not expect this at all. If anything I thought I’d get a few days of respite, but not to this extent. Wishing now I’d stayed a damned week instead…

It was lucky I went with my new chair – GTM Mustang, from Cyclone. [Mine’s black and silver and so comofortable]. It made all the difference there. I managed to go around everywhere I wanted with absolute minimum assistance, which was amazing. Thus I question, how is it now, from the time I’ve come back, am I passing out with pain again? Did being back home make me stronger? Is there a radical difference being up north? Is the weather? Is it about living so high up [compared to London]? What is it about being here that makes it go from 9¾ was a maximum pain there, to being a minimum one here?

Even when I was very stressed there (just try taking the train from Euston station when you’re in a wheelchair!), it still didn’t get too bad… well, until I’d been on that damn train about two hours, and it was already 7pm! And yet, all I’ve done since is, well, nothing, because I can barely move.

Is it psychologically-induced? There’s no denying the immense depression and fear I have living here, and not back in London. I’ve never liked it here, and I am horribly resentful and fearful of life here. I feel restricted because I’m forced to be more reliant on others here – you have to drive or be driven here, there’s no public transport available (certainly not adaquate enough for indipendent wheelchair use, like London has). There’s a lot of depression and fear involved to being here. I am just a completely different person there – I’m home, safe, and I know and like how the world works there. Here… Nothing of the kind, and I’m terrified and agoraphobic when here. That can’t help.

It’s always cold and raining, so wet, damp, painful… meaning that it has an immense knock-on effect on my physical well-being, and thusly has a knock-on effect on my psychology. Clearly, the answer is that it’s everything together doing this. It’s a messy, tangled ball of knotted string…

The fact there’s no help or support in any real way, means I’m left floundering. I’ve had to ask to be re-referred to neurology because this is getting worse. Physiotherapy has dumped me (there’s no NHS money for long-term help, and she was a wet blanket and a half anyway…). I’ve been waiting about a year for psychological help, and I’m still waiting, desperately trying to tread water in the meantime. The pain clinic waiting list is a joke – they took 4 months to get back to me, only to tell me that from then (July) they notified me it was going to be yet another 9 months of waiting list to go. And nothing else has been offered, or is available, because I live where I live.

I had a nightmare of coming off the road on a corner of a steep mountain road and falling down hundreds of feet into a deep canyon. I turned around in my car seat, squeezed my eyes shut, and said goodbye as we fell and fell and fell. Just in the moment before hitting the bottom, I came round. Before then though, I didn’t realise I was dreaming… I really thought I was going to die. From disbelief in the first instance, I turned and accepted my fate. It was so horribly surreal to face death like that… and perhaps miraculous to find out it was just a dream.

It’s how I feel in life – it was a very Jungyan dream. I feel like I’ve gone off the edge of a cliff, and I’m just falling and falling… but there doesn’t seem to be any way to be woken up from this nightmare that I’m living in. And I just keep feeling like I’m falling the whole time, because there doesn’t seem to be any kind of end or stability in sight at all. I’m closing in on the 4th anniversary of the start of this [next month]… and I’m just not even close to getting this sorted out. I don’t even have psychological support. I’m just on a useless waiting list, and it’s not like those call centres where the phone queue tells you where your place is… They just make you wait in Limbo until you finally get that letter to say it’s “your turn”.

I don’t like being back. I wish I didn’t have to live somewhere that’s not interested in being good to me, and in fact, only makes things worse. There’s no long-term support of any kind, and I have no emotional support from the professionals. I’m a lost Aspie, falling and floundering… And I still can’t understand why they can’t help me to level out and fly…

It’s come to the point of I’m getting scared of what’s going to happen to me next. How much the people out there who are supposed to help you are not only just going to ignore you, but they’re going to kick you in the nuts when you’re down, too. With Jibgle Bells on their toes.

Two bad things happened today, and I’m wondering how much more shambles there’s going to be in out beloved Health & Social “Care” system before most of this place falls apart because no one can get the help they need to be even vaguely productive. Or even alive.

The DWP are even worse than a joke… It’s almost like they’re in the business of causing as much suffering as possible. Constantly, consistently, and completely.

I have tried and I can’t find anyone else quite like me… and it seems that because I’m quite unique everyone wants to put me down. Even downright lie.

Today I got the PIP assessment outcome. Turns out that they give with one hand and take with the other.

Firstly, I finally got the “Higher Mobility” component – lets get the one single good thing out of the way.

Secondly, it turns out they lied outright on some of the “Daily Living” parts, leaving me with the same “Standard Daily Living” Component. I know this because I called the guy who looked at the case and made his decision. He explained what “evidence” he had been given by the person I saw… and it turns out they omitted some things and downright lied on others. They hadn’t listened. Clearly rushed the report. Missed giving them vital evidence and letters. Misheard or misreported what I had told her (how the hell am I supposed to be able to be able to still code and do my own sites etc “competently” or game when I’m like this???!). She even missed giving them verbal communication and somehow “saw” I had “good” dexterity – whatever hands she actually saw, I totally want them instead! 😤😡

In hindsight, she was all “Oh I’ll do this right now for you so it’s all done and with them”… and ergo clearly rushed it and did not do a good enough job at all. Or she was just mean. Either way, I got screwed.

When I called, at least the guy on the other end was willing to put me into the first stage of Appeal (some sort of re-review). He stated he would send me a copy of the main report, and I was to note my responses to them and why they were wrong. I was also to send a copy of the letter from the neurologist regarding the Hemiplegic Migraine diagnosis.

You know why…??

Because that inebriate I saw negated to send the diagnosis letter I gave her or mention it whatsoever. At all. It wasn’t even in the notes. We talked extensively about it.

So I’m hopping harder than a bag of frogs, and as pretty furious as my emotions will allow me to be without going into meltdown.

Now… You’d think the horrible would stop there. But, oh no. This is my life we’re talking about. Sod and his Law wasn’t done with me yet…

Next, the letter that came with the PIP letter today was from a stock and repair centre for basic mobility. I was wondering why they had sent me what could possibly me the least specific, least helpful letter ever.

I understand from our Approvved Repairer that they have not been successful in contacting you to arrange an appointment to either deliver/collect/repair equipment etc., [sic]

I hall be most greatful if you will contact [them] to agree a mutually convenient deliver date and time.

I had no idea what it was about… Who the hell would? So of course I rang them. And the frogs swallowed a Tigger and they started hopping to the roof.

I had never been contacted by these people before, so what the hell were they talking about? Well, it turns out it was for a wheelchair. Some off-the-peg piece of crap they had probably dug out of the back room. You may be unsurprised to hear that was not the agreement nor what I requested whatsoever.

I had asked the physio (a wet blanket if I ever saw one…) to be referred to ALAC (Artificial Limb & Appliance Service) of Wales (based in Wrexham around here) to be assessed for a proper wheelchair for my long term needs. What do they do instead? They don’t even contact me, sending some nightmare chair to their distribution and delivery centre without even talking to me first… I cannot explain just how bad and unprofessional that is.

Let’s just say if that was a professional private company, they’d have their ass handed to them via the serious complaints system of the corporation. My mother is still a professional nurse in a care home, works with them all the time, and even when I told her, her reaction was… “What?? Why?!” It was three ways from Sunday deplorable. And of course I told the service centre guys to send it the hell back.

My reaction was absolute astounded horror. Actually, that doesn’t even cover it, but it’s the closest the English Language has, I think. I couldn’t even think or move (well, as much as I might be able to anyway). It was a good thing my father was home. He helped calm me, then I spoke to my mam at work so she could give me some decent jargon to throw back at them. But when I was all ready to go, no one even answered the phone. All I got was voicemail. Frickin voicemail. On a Friday early afternoon. Talk about a message of “bugger off and don’t spoil my weekend”…

Thus I sent them a rather lecturing and detailed email. With big words. Well, they asked for it, the buggers.

I’m already struggling with my own current wheelchair (do not ever go toAbleworld Specialist Department – they’re rediculous and pathetic, and I wish I had never, ever chosen them to get my chair though… They do not know what they’re doing 😤 They ruined my chair measurements and centre of gravity, got fittings wrong, and did not give me what I asked of them… And now they’re arguing with me about it!! 😲 ). I did not need all this as well. In this country [Wales] they are not taking disabilities, ASD, or chronic illness seriously at all (except for a few professional individuals). I’m 36 and struggling. I should not be struggling, illness and ASD or not. It’s not right or fair or even logical to stop people reaching their potential because you just get in their way.

… My answer is what I have come to call The Queen of Darkness. With age I realised that this part of my Aspie (as I know it to be now) took over and just barrel-rolled over everything and everyone in her way. Darkness is her home. Bad things are her air. She fixes the wrong and doesn’t take crap from people. She [I] made it clear that “no” was not an option. That walking over her was not an option. That being an idiot wasn’t an option. It’s something that came out of me through necessity to survive my later teen years and 20s. Then… “She” disappeared.

Perhaps because that part of me was no longer needed. However, now it seems that she needs to return. So I guess someone’s going to have to put her Big Girl Panties on and get serious with people and life again. Otherwise I’m never going to get anywhere.

If there’s people out there who can lie and rig the system to the point they can defraud the DWP for years, there is most certainly a way to package the truth to also get what I require to help me live my life. To save my life. To get the same thing, but for real reasons. It’s certainly not right that I struggle so much, and these struggles get pushed under the carpet by the PIP people without another care in the world, as if they – if I – do not matter.

I don’t even know how to say this… I am frustrated and just lost… I feel like I’m stuck in limbo, waiting for some kind of life to start – one that is recognisable as one – and yet after 3 ½ years I’m still stuck and getting nowhere fast.

I have a formal diagnosis, but it’s got me nowhere, except just knowing what I have. The health & social care system couldn’t give a rat’s ass about any of it. I’m stuck on waiting lists that are longer than Andrex toilet roll, and stuck in the house because I cannot go out in the wheelchair I have, despite the extra modifications made to it with cushions. I went out yesterday, and today I just can’t. Despite the nice weather. I have to be stuck indoors because my wheelchair hurt me. Today I can barely feel my legs or use them – even the small amount I can is too precious to be messed around with, so how can I justify using something that takes that away from me? It’s not OK to have to crawl – with difficulty – to the bathroom because of that. It just isn’t.

Even the wheelchair company – privately contacted – has a bloody waiting list, although it’s about a week, instead of months or years. But t he thing is even they are making me mess around and wait – and they’ll be taking actual real money off us. Well, only if they get their act together… it’s not like they’re the only ones out there. So far it will have already been a month since the first fitting to try and get the issues with the “prescription” ironed out – then I’ll have to wait another week or so for the new quote. And we might then end up having to go round again. Even when it’s finalised, it takes about 6 weeks to make it, so there goes that month and a half too. I’ll be lucky to get one by bloody Christmas.

If I wanted one organised with the NHS it would take up to maybe nearly a year to sort it out, which is ridiculous and unacceptable. Despite asking back in January or February for physio (whom, it turns out I would not only need for actual physio, but to sort out eligibility and getting a proper chair), it seems I have only just been referred now. And the waiting list is long. I was put on the waiting list for psych back in January (I presume, anyway), and it seems they have up to an 18 month waiting list. I have also been referred to “Pain Management” … although I don’t know how they can help when your problem is you can’t feel any pain [almost]. The last thing I need is an anaesthesiologist – it’s the one thing I’ve got more than enough of is lack of pain… or anything. Everything that used to kill me with agony I barely notice now. It’s come in handy, but not great when you see injuries, bruises, cuts with dried blood, and you have no idea how they got there.

I want to do things. One day I’d like to be well enough to have a job again, even part time. But I can’t do that if I can’t even sit in my bloody wheelchair for two days in a row. I’m being hindered and disabled by the system, less my (strange and almost unique – unfortunately) condition[s]. My array of complicated needs and history just makes me invisible to the system it seems, and it’s degrading, demeaning, humiliating, and lonely.

All I want is to have the tools and means to do the things I love – going out with my dog, visiting historical or National Trust places, maybe going on holiday, certainly going to work as a data analyst… and I just simply cannot do that with the state things – and myself – are in now. It’s that simple. And if the government hounds wanted me off ESA and into work, then they should make it possible, not erect barriers via austerity and raging stupidity… Like keeping Jeremy [H]unt in charge of healthcare. It’s like the wolf guarding the hen house… there are going to be many, many unnecessary casualties with no favourable outcome to anyone but the wolf.

What I need is physio, someone to tell and show me how to deal with the paraesthesia and numbness caused by my Hemiplegic Migraine/Weird Fibro combo, a good active wheelchair, emotional support designed for people with ASD, and the opportunity to do what I love (the latter of which I can manage myself).

Apart from the latter, the rest is being withheld from me by extensive waiting lists, caused by a government who screams as all us disabled, disenfranchised, demeaned, ignored, and ill – or “Scroungers” as they call us – to get our arses back to work.

Presumably this is all with the help of the Magic Fairy, who will magic up all the things we need without having to go to the NHS or through Social Care… Because it’s not happening otherwise.

“Alternative” medicine is all I have left to use now – anything synthetically grown in a pharmaceutical lab generally does not agree with me (with severe side effects)

The latest attempt at some relief from this neuropathological crazy is CBD, or Hemp oil (aka “legal” type of cannabioid). It tastes of pure evil, but it’s early days so far. I’d like to think there’s a different, but it’s too early to really tell.

The essential oils recipe I have now is pretty fantastc – and including basil, Wintergreen, white camphor, juniper, and frankincense are all very important, key ingredients to making it work… the Wintergreen and Frankincense especially so. All put in pure Coconut Oil (but sweet almond and jojoba oils are also really good too) to be massaged in at least twice a day.

Another really helpful thing has been Magnesium Oil [spray], which helps dissipate the spassms and relaxes the muscles around the neck, shoulders, and shoulderblades to help prevent them – or at least the worst of them. Little ones get through.

This is obviously a very expensive treatment plan. They’re all very expensive products, and when added together is a rediculous amount of money… it makes you realise how it must feel to try and scrape together your healthcare treatments in the US and how lucky we are to have access tot he NHS.

Unfortunately, the NHS doens’t do natural products, and so I must use a hell of a lot of my pittance from PIP to pay for all this. If the government thinks what pittance pocketmoney they give is actually enough to pay for any of what ill/disabled people require to pay out for things they need, they’re completely delusional in the most rediculous way. Presumably they also believe in unicorns and see leprechauns, too… And they’ve clearly never been shopping for necessities to help with such situations and circumstances.

I’m relieved that there is at least something out there that helps. If I just relied on pharmaceutical meds, I’d be screwed. I can barely function on the Pregabalin, so there’s definitely no chance of going downhill from there on medication that’s supposed to help, but instead makes me sicker. Thankfully, Mother Nature got there first, and this Wiccan is used to looking elsewhere for answers rather than “modern” medicine.

I cannot even explain how exhausted I am. Meltdown after meltdown – horrific ones – just don’t seem to ease, running into each other, causing complications that cause even more… It a nightmare that doesn’t seem to end. Pain, confusion, exhaustion, [on top of my usual] fatigue, disorientation, pure terror.

All apparently starting from a generic cold/fine virus I got… which I completely missed, because the symptoms are just like a Fibro flareup: extreme temperature changes (often caused by my pain), aches, stiffness, fatigue. But the grogginess and disorientation that came with it should have been warning flags. The unfortunate thing was I was also in the middle of a rather big flareup at the time… It’s all been a nightmare.

I “black out” during meltdowns. I have no idea what’s going on, what I’m doing, what is happening around me or to me. I also don’t remember afterwards what happened either. There’s simply no memories being put down, so I haven’t a clue. This time, after I didn’t “come round” properly from it, I though it strange… then after a while I found bumps on my head, and when someone checked my head, found the top of my head not only had a few big bumps, but it was also bleeding from some cuts on it. Then I realised what was wrong with me… and old memory and familiarity: I had concussion. Groggy, slurred speech, confusion, disorientation, sleeping constantly (I never sleep; even at night I barely sleep)…

I’d been through this when I was 16 and had a horse riding accident, banging the back of my head quite badly and knocking myself out for a few seconds. I fell off backwards, hitting my head first and hurting my neck while I was at it. My back, hips and sacrum came down next, damaging my lumbar area. The cost of that accident has been lifelong… and the memory of concussion was one of those. It was a jarring realisation, but at least I knew what was causing it.

I’m lucky my mother’s a nurse. She checked me out, was happy(ish) with what she saw – pupils reacting and even, BP normal (for me, anyway), pulse fine, general consciousness OK apart from grogginess and some confusion, memory was OK (didn’t forget what was going on, meltdown notwithstanding). If she wasn’t concerned then I was not either – although to experience the side-effects is pretty scary. But I’m experienced enough after working as a Nursing Assistant/HCA for many years to know what’s right and to trust your nurse, and she is definitely one of the best (no I’m not biased, I’ve worked with many of them over the years and just know a good one…!).

Learn The First Time…

This same thing happened before, with the due to the very same problem. I missed it again, and I wasn’t looking after myself very well. I missed another trigger-point, the warning signs, everything.

Now there’s a new(ish) “rule”: Juiced drinks or smoothies every day, especially smoothies including vegetables and extra minerals if unable to eat properly (the pain depresses or muddles my appetite quite often). Back in London, I learned to use this rule and stuck rigidly to it, and my health was pretty good. I didn’t miss a day of anything from cold/flue viruses for the longest time, and even my asthma and temperament were better regulated. This is now being reinstated – I’d rather be healthy and broke than go through this again. Ready made pure juices smoothies like Innocent, Cold Pressed, Tropicana, etc., are difficult to afford but are clearly vital.

It’s hard to learn the triggers – I’m not exactly an “old” dog, but after spending over three decades trying to ignore and deal with certain “idiosyncrasies” of myself, it‘s so very hard to realise I have to be very aware of myself, and to understand that I can no longer be complacent or dismissive of them: they’re signs and “idiosyncrasies” of the Aspie in me, and they need to be looked at and checked for general trigger points. Illness has always (unknowingly, but quite clearly in hindsight) been a big trigger point for me. Add that to already learning to deal with another illness, a severe and debilitating condition, and it’s just going to be bonfires and gasoline. Taking the viruses out of the equation is an absolute necessity. One horrible illness at a time is enough for me, thank you very much.

Learning Curve

Learning all all these things comes at great cost. Emotional turmoil. Relationships. Exhaustion. Coherency. Injury. Concussion…

It sometimes just doesn’t seem fair that it’s possible to leave and ignore someone with such difficulties without assistance. I’ve been ignored or dismissed, or just lost in the system, my entire life – and it’s no different now. When I was a child no one had even heard of Asperger Syndrome. By the time I got the diagnosis I was too old for help – the buzzwords surround only the children these days, and adults are ignored. It’s even worse in North Wales… Everyone is ignored. Even the NAS (National Autistic Society) has virtually no resources invested here; everything is down the south coast, around Cardiff and the Brecon Beacons. They can’t even answer the phone.

Don’t even get me started about the local NHS and Betsi Cadwaladr health board… They haven’t even heard of their own backsides, and are medieval in their treatment of any psychological/neurological/mental health situation. But then, North East London Foundstion Trust was worse… so it seems a little petty to complain. At least coming to this area was a microscopic step up, though I miss my old GP immensely. He was a real gem when this all started and went to hell in a hand-basket.

This learning curve is painful. Physically and emotionally. It’s destructive. It’s mistake after mistake… A never-ending nightmare of never-ending meltdowns. Exhaustion, pain and confusion causing such extreme fear and terror they cause unimaginable meltdowns that are clearly very destructive. I am apparently can pose possible danger to myself and others, frightening me even more – so not helping there, becoming a trigger in and of itself. I am lost and I do not know what to do.

I have more coping strategies. I have more information. I have piles of beanie toys, which help me try and stay calm and comforted. But there are always new or unexpected triggers. Or everyone else is tired and not able to deal with me. They’re mean and get horrible with me, making it worse, escelating things, scaring me even more. I feel so alone, even more so when this happens. I have nowhere to turn and no one to really talk to, no one to help, no one to give guidance regarding understsnding my ASD and how to deal with it and Fibro.

The meltdowns were actually quite well controlled until I got ill [with cold/flue]. So I feel really bad it slipped past me – yet it may not have if I wasn’t already in a horrible fibro flareup already. But that probably helped cause it, destabilising my immune system and not allowing me to eat properly. I did not turn to juices/smoothies to increase my nutritional intake, and thus became ill. When I was reliant on them I had no issues – somehow the significance of this fact passed me by, not equating it to being able to help me now.

All I can do right now is hope that each costly mistake will have a return for the cost. That lessons will be learnt, better strategies or help will come from it. That there will be something to offset the hefty price. I’m currently paying for it with nightmare days, broken relationships, a broken family, multiple seriously-painful bumps on my head, multiple cuts on my head, concussion, emotional fragility, inability to cope, mild depression, suicidal thoughts, extreme pain, feeling confusion, feeling lost and alone.

And no, I still haven’t received any help. But then, I never have… so I hardly expect any now.

I keep asking, keep looking, keep hoping. But I’m starting to see it’s really nothing but a futile idealism now.

So I just have to keep paying the price… But my account is now severely getting into debt…

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